Today has brought us bad news

Good News/Bad News

 

Lizze visited with her neurologist this morning. This was a very bittersweet appointment and one that brought with it, some very disheartening news. One the positive side, her neurologist has agreed to take over as her pain management doctor. This is a really good thing because it puts all her care under one roof. This also means that only one doctor will be managing all her medications and that’s also a good thing. However, this is where the good news ends and the bad news begins.

Out of options

 

Lizze has had the same migraine now for over 5 months. The previous headache infusion was a failure. For those unfamiliar with what a headache infusion is, it’s basically Intravenous medications, given for a set period of time per day for up to three days in a row. Lizze was hooked up to an IV for about 6 hours a day, for 3 days. The goal is to break the cycle of the migraine and it works wonders for some people.

However, Lizze is not one of those people, at least not anymore.

Her doctor, who specializes in migraines and is a well known expert in the field, has to us that we have literally exhausted all of our options. There isn’t a single preventative medication in existence that will address her migraine. She is and has been, absolutely miserable and understandably so. I can’t even imagine what she lives through every day. The kicker is that stress is the absolute worst thing for people in her situation. Thank God we don’t have any stress in our lives…Right? 🙁

The only option she has left is the use of Botox in combination with an occipital never block.

According to WebMD, this is how Botox is used:

Botox to treat chronic migraines is given at intervals of about 12 weeks as multiple injections around the head and neck to try to dull future headache symptoms, the FDA says in a statement.
The FDA says it’s important that patients who suffer chronic migraines discuss with their doctors whether Botox is appropriate for them.

Allergan Inc., the maker of  Botox, says in a statement that the FDA’s approval applies to people with chronic migraine, which it defines as a “distinct and severe neurological disorder characterized by patients who have a history of migraine and suffer from headaches on 15 or more days per month with headaches lasting four hours a day or longer.”

The company says that when treating chronic migraine, qualified medical specialists administer 31 Botox injections into seven specific head and neck sites.

It says that Botox, when injected at labeled doses in recommended areas, is expected to produce results lasting up to three months depending on the individual patient.

The downside to this, aside from the fact that they would be injecting Botulism into her face and neck, is that it doesn’t always work. In fact, in some people, this actually produces worse migraines than what they are currently suffering from. This is cause for concern and careful consideration. 

The other scary part is the occipital never block. According to John Hopkins, this is what an occipital nerve is and what the block entails:

Touch, pain, or temperature sensations in the scalp must be conveyed to the brain in order for us to “feel” them. Several nerves accomplish this purpose, and the greater occipital nerve is one of the more important ones. There are two greater occipital nerves, on each side of the head. Emerging from between bones of the spine in the upper neck, the two occipital nerves make their way through muscles at the back of the head and into the scalp, supplying feeling (including pain) to a good portion of the back and top of the head. They sometimes reach nearly as far forward as the forehead, but do not cover the face or the area near the ears; other nerves supply the feeling to these regions. Sometimes, even though they don’t reach the front of the head, through a mechanism called “referred pain,” irritation of one of the occipital nerves can be also be felt near the eye on the same side.

You will be asked to lie down on an examination table. The scalp at the back of the head will be cleaned with alcohol, and your provider will locate the site of the nerve feel (it is often quite tender). Using a thin needle, about a teaspoonful of a mixture of local anesthetic and steroids are injected into the scalp in the area of the “trunk” of the nerve. If the injection has been properly located, the scalp on the injected side will quickly go numb, often relieving pain within minutes. You will be asked to note how this numbness affects your symptoms. A more permanent procedure on the nerve would be expected to have a similar effect. This numbness will wear off over several hours. If there is a significant amount of inflammation present, the steroids may begin to work in the next few days to help bring your pain under control for longer, sometimes weeks or months.

This also runs the risk of not working and also making the existing situation worse. The information online really talks it up and minimizes the side effects but if you browse a few sites where people discuss their experience with this procedure, it’s not always pleasant….at all. This makes me nervous as well.

If this procedure is unsuccessful or makes the problem worse, her options are extremely limited. In fact, the only option is at home infusion therapy. I think that pretty much speaks for itself.

That’s it. There is nothing left that can be done. This is a horrifying prospect and disheartening as well. This is very risky, at least in my opinion and I’m really concerned about the possibility of a less than positive outcome. On the other hand, Lizze is in so much pain, every second, of every minute, of every day that it just might be worth the risks. Having said that, if this does not work and things actually get worse, I don’t know how she wold survive that.

The pink elephant in the room

 

To make this even more complicated, there is a pink elephant in the room. That pink elephant is called Dysautonomia. There is a very real chance that Lizze, much like Gavin, suffers from Dysautonomia. This is a dysfunction of the autonomic nervous system and is known to cause migraines. With that said, her neurologist has referred her to University Hospital, in Cleveland. He wants her worked up for what he suspects is Dysautonomia. Her appointment is for the end of August and that’s quite a ways off.

She may or may not have Dysautonomia. Also, even if she does have Dysautonomia, it may or may not, have anything to do with her migraines.

We have to decide if we should wait until August and see if they find that she has Dysautonomia or go through with the procedure. If the Botox and occipital nerve block actually work, than they would likely be losing effectiveness about the time of her Dysautonomia evaluation.

Difficult decisions made in a really bad situation

 

There are so many things to think about before deciding what she should do. The decision is hers to make but we are working on this together. Personally, I’m not only worried about this but also Gavin’s escalating behaviors. The last thing in the world we need is for Lizze to be down from either having a migraine or possible side effects from going through with the procedures.

There is no clear cut answer or direction to go in. The reality is that Gavin’s behaviors directly impact our decision making process on many things. It shouldn’t be that way but that’s life in the Lost and Tired family.

Truthfully, even if Gavin’s behaviors were in check, his major health problems would still be a big influence on what we do. We don’t know what’s going to happen with him. We’re literally living day to day with him as we wait for more testing to be done this summer. If both of them were down at the same time, I honestly have no idea what I would do.

I don’t even want to think about it.

The bottom line here is that Lizze needs and deserves relief from her pain. I’ll back whatever she decides and pray for positive results. She has done so much for our family, especially Gavin and she deserves to be the one that we focus on right now. Unfortunately, she doesn’t always see it that way and continues to put everyone else ahead of her.

Nothing is ever easy………

 

 

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Beth McGarity

I have never tried the Botox myself, but have seen it work wonders for some patients, especially those with a tension component (muscle spasm, neck pain). I have, however, had multiple occipital nerve blocks that helped immensely. A few times, the doctor combined this with cervical (neck) trigger point injections of a combo of Marcaine and Lidocaine. (I absolutely refused trigger points with any steroids as I don't tolerate them well and they seemed to make things worse after the numbness wore off.) I would definitely try the occipital block if I were in her shoes, but maybe without the steroids the first time if that's an option. If it helps, but there is still a concern of significant inflammation, the steroids could be attempted the next time. I'm not a big believer in corticosteroids for soft tissue problems, especially muscular. They work wonders for joint inflammation and moderately well on connective tissue, but I just haven't seen that much evidence in myself or patients that it alleviates muscle pain or spasm. Also, if her provider believes there is enough inflammation to warrant steroids, they can always be given PO in addition to the nerve block. Just my opinion based on my own experiences, of course.

Susan

My husband and I have 2 sons with severe autism. I too started severe migraines daily when I was 42. Went to the Diamond Headache clinic in Chicago and tried everything with no helpful result. I ended up using excedrin and Fiorecet daily for about 10 years and now have weened myself down to 4 excedrin a day. My cousin who is a psychologist said I was carrying my heartache in my headache….and maybe that's true. Anyway I hope Lizzie gets help somehow.

Tam

This may sound dumb, but have you tried going to a chiropractor? The botox injections are really about forcing muscles to relax, it's my understanding that if they work it's because they relieve pressure which relieves the headache. Chiropractic adjustment can do the same thing if the tension is due to misalignment, as it is in a lot of cases. If she hasn't tried it, I'd be inclined to have her at least try that before going the other routes.

The nerve block actually sounds like a better first option than the botox, if they're really doing what that description says. If they're able to test first by injecting a local, and her headache eases up, then they'll know whether a longer term steroid injection will be likely to help, if not they can just choose not to inject it and you can try the botox. With the Botox, though, there's no test run, once it's injected you're stuck with it until it wears off.

kwombles

I hope what ever decision she makes that she gets relief.

Jenn50

A friend of mine has severe and persistent migraines which have resisted all other treatments. The Botox helped with them, in conjunction with traditional migraine meds. It isn't perfect, but it HAS helped. Best of luck, whatever Lizzie decides.

NicolaT1965

Hello, I am from the UK and I have seen recently people who have had FANTASTIC results with the BOTOX therapy for migraines. If you are interested I will look out where i saw it and email you a link. I thought maybe this would give Lizzie some hope.

Love to you all
Nicola

Rachel

So sorry for Lizze's pain and for the less-than-perfect options. I think the question to ask is this: If the new treatments cause more pain, will the pain ease up if you stop the treatments? If the answer is yes, then I think they're worth trying. If the answer is no, and the increased pain could become chronic, then I think it makes sense to proceed with caution.

Migraines are awful. I have them, but never for as long as Lizze. I can't imagine having one for five months. Well, actually, I can, and it's an awful picture.

Hugs to you both. May you go from strength to strength.

Kathy

Well, if there is hope of either or both treatments working, I would be inclined to try. Not only does Lizzie deserve to feel better, in the long run, you will have 2 functioning adults dealing with the rest of the stuff going on.Altho the cases are very different, botox works extremely well for my daughter-in-law. I think it sounds creepier than it really is, since we grew up terrified of contracting botulism. The thought of being pain-free is pretty tempting…

Lost_and_Tired

You're absolutely right. This would only address the migraines and not the rest of her pain. However, I would think that this would be a major victory for her if it worked. 🙂

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